Controlling the Uncontrollable with IBD

With Crohn’s Disease and ulcerative colitis (IBD) being such unpredictable chronic illnesses, there is an enormous lack of control that comes alongside this particular diagnosis. This doesn’t just hold true for patients, but their caregivers and loved ones as well.

I have mentioned before that I developed a huge need for control in my life since I was diagnosed with ulcerative colitis at the age of 13.

This is a bit embarrassing but…

I actually used to keep a notebook documenting every single thing I did each day, who it was with, what I ate or drank, what clothes I was wearing and who saw me in them, the time I got out of bed, and the time I woke up. Trust me, I KNOW that is not “normal” by any stretch of the imagination. And yes, I have been in counseling. ; )

While that was certainly not a common way to go through life, that notebook really did help me for many years. It was very on and off given I couldn’t write in it (nor cared to) when I was either very ill, in the hospital, recovering from surgery, dealing with uncontrollable pain, and/or just wanted to shut out the world. But, it did help me feel in control of the things I could be in control of.

Six months before my last surgery, I was in the emergency room weekly if I wasn’t on antibiotics. As most of you know and can attest to, the majority of inflammatory bowel disease patients pretty much wait until they are dying before going to the hospital or emergency room. I say that not in a funny way but to really hone in on the fact that it takes a tremendous amount for me to go to the ER - as I know it does for so many of you reading this. I even wrote something about the reasons behind that here.

Since I would always leave the emergency room against medical advice, I would be discharged with flagyl and cipro given my white blood cell count was always elevated. Taking those medications made me feel like for the moment, I was okay. I could depend on those medications to keep my symptoms at bay so I wouldn’t have to randomly be in the hospital in excruciating pain, throwing up all over the place and having no idea what was happening to me.

Fast forward about five months after my surgery and we are in late November; a week before Thanksgiving.

I had the exact same pattern of symptoms happen to me and alas, wound up back in that wretched place.

I kept asking my boyfriend and trying to push the ER doctor to give me something I could do or avoid doing to help control what I was going through. I couldn’t imagine this happening again during Thanksgiving or just not being able to make it to spend time with my family and friends because of this.

I focused on the food part since that has always been my way to control things. I kept saying it was probably the bagel I had the day before or the fact that I had more servings of baked chips than I should have. Or, maybe it was the smoothie I had earlier that day. I do normally put more liquid in it so I am sure the thickness of the smoothie caused all of this.

I started convincing myself it was gluten and I was going to be giving that up. I even tried hard to stick to liquid nutrition only - which didn’t last for very long. I recently began consuming more calories earlier in the day - I tried to believe that was the problem.

I even tried asking doctors to prescribe me flagyl and cipro given another abscess was found so I knew I would be “safe” given the holidays and a conference I had mid December that was a plane ride away.

You get the idea.

I drove myself crazy because I needed a reason for what was happening.

And I needed a way to control it. But the truth is, with most situations those of us who suffer from a severe form of inflammatory bowel disease (IBD) experience, it is not about the food. I know some will disagree wholeheartedly and that is fine. I am someone who personally believes if a symptom or situation is going to occur, you could be eating healthier than anyone, and it will still happen. At least that has been my experience. I do know people who are able to manage their symptoms through dietary and lifestyle changes but that has never been the case for me. All the more reason we need to do our own trial and error and remember my IBD is not your IBD and vice versa. There are so many genes at play and therefore, so many factors involved.

I find this to be one of the hardest things about living with IBD to accept. I cannot control my body or anything that happens to it. It is scary. It makes me feel like my hands are truly tied. If I was a religious person, I would give it all to God, and I envy those of you who feel a deep connection to your faith. I would love to be able to surrender in a way and know that things happen for a reason and worrying about it or wasting time trying to control the uncontrollable just adds more needless stress to my life.

I keep fighting this though.

I just want to be able to do something to help myself. I do think that is why our loved ones push sometimes. They want to feel like they are being helpful and can find little ways to help control or manage our disease. I know it can come off as ignorant to many of us (especially if it isn’t someone we trust or are close with) but I know the frustration is all around.

I know I need to let go of my need to control so much but it is flat out hard. I feel like I am giving in or giving up - even though I rationally know that isn’t the case.

Can any of you relate to this? Do you find yourself trying to control certain things or blame your situation on something you did or didn’t do in order to try and make sense of it all?